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Should public entities have access to an individual’s genetic information?

“Genome sequencing.”

A phrase that has driven to the forefront of our conversations about the future of biotechnology. In recent years, our ability to read and understand the human genome has increased substantially. As the cost and effort for utilizing this technology is lowered, it’s becoming more critical to analyze the multitude of consequences and ethical questions that arise from this. Much of the conversation on the dangers surrounding genetic technology has been about the ability for humans to manipulate fetal DNA in order to favor certain characteristics. However, our discussions should not just be limited to the future. One of the topics that is already impacting individuals today is genetic privacy.

In a talk I recently watched by Yuval Noah Harari (clip linked below), he discussed a potential future where artificial intelligence knows us better than we know ourselves. An example given in this talk was a technology that could track our eye movements on our screen to see what we subconsciously are attracted to. These analytics could then be sold to companies so marketing could be tailored to every individual, making them more likely to buy those products.

Yuval Noah Harari’s Discussion with Russell Brand
Start Watching at 1:01 for Relevant Portion

While to a certain extent, this phenomenon is already prevalent in our society, access to information about individuals’ genomes allows space for many more ethical concerns to come up. 

For example, if insurance companies had access to an individual’s genetic information, would it be ethical to charge based on that knowledge? Should employers be able to act on information about their employees’ genomes? Should the government have access to an individual’s genetic information? Is a person required to disclose genetic information to their spouse before deciding to have children? Are doctors given the right to access this information (without consent) to best treat the patient? These are just a couple of the concerns surrounding genetic privacy.With gene sequencing technology advancing at a rapid rate, and more people choosing to have their DNA sequenced, it’s becoming urgent to understand and examine our genetic privacy laws from a critical ethical lens. 

While the areas of discussion surrounding genetic privacy encompass many different situations, for the purposes of this project, I’ve chosen to highlight the central question as being:

Should public entities have access to an individual’s genetic information, and should this information be actionable?

Over the course of this page, I’ll be exploring the different areas of this issue from a bioethical lens in order to showcase the importance of bringing discussion to this topic.

The video below is an engaging resource that shows the potential negative consequences for individuals wanting to sequence their DNA.


Section One: Understanding The Policy in Question

The main policy that impacts the central question in our current society is called the Genetic Information Nondiscrimination Act (GINA)

“[GINA] protects Americans from discrimination based on their genetic information in both health insurance and employment.” (genome.gov)

GINA has two main titles that cover insurance and employment protections, respectively.

  • Section I: Insurance
    • Bans insurance agencies from…
      • Deciding someone’s eligibility based on genetic information
      • Making decisions about coverage rates based on genetic information
      • Requiring individuals or their family members to undergo genetic testing
  • Section II: Employment
    • Bans employers from…
      • Making hiring/firing decisions based on genetic information
      • Requesting individuals to undergo genetic testing

While this policy was created with the intention of safeguarding individuals from discrimination based on their genetic information, there are many other areas outside of insurance and employment where individuals are not protected from this potential discrimination. Due to the way health records are stored, if an individual chooses to have their genetic testing results added to their record (for optimal medical care), this information then becomes accessible to law enforcement agencies and other public entities. 


Section Two: Perspectives on this Policy (Considering Bioethics Principles)

In researching different perspectives surrounding genetic privacy, I was able to find three main areas of thought. These perspectives varied in both the right to availability of information and the right to the actionability of this information.

Genetic information should be available and actionable. Genetic information should be available, but not actionable. Genetic information should not be available or actionable for any public entities.

Viability: Within the medical system that we have today, it’s extremely difficult to set different privacy precedents for different types of information under the same umbrella. 


Impact on Others: The knowledge that comes with genetic information doesn’t just impact the individual. An employee’s risk for certain medical issues could affect small businesses. Spouses would be impacted if the individual chose not to share this information, etc.


Benefit to Society: In the case of making this information more publicly accessible, if access to genetic information helps law enforcement in pursuing criminals, this would be a positive for society.

Realistic “Black-Market” Scenarios: By leaving the potential for genetic information to be actionable, you’re creating a situation that incentivizes the selling of this information. However, by making this genetic information available to public entities, but not actionable, you’re protecting the individual while reducing risk for other types of illegal activity


Ease of Implementation: We already have the GINA policy in place, so this is a logistically beneficial route to take.

Protection of the Individual: Each person should have a right to their own genetic information and the right to decide who this information is shared with. In addition, not making this information available is the best possible protection against discrimination based on genetic information.


Past Privacy Laws: Our society has existed for a long time without the ability to read an individual’s genome. Although this technology now exists, it is not fundamental to the way law enforcement is run, insurance policies are decided, jobs are given, etc.

Stresses the principle of beneficence: Benefit to society and the ease of the system is prioritized in this argument.

Stresses the principle of justice: Shares the importance of everyone’s (including entities) right to access information that would impact them.

Stresses the principle of non-maleficence: Prioritizes the path that would cause least harm to all parties involved.

Stresses the principle of autonomy:

Individual rights and controls are critical to this argument.


Stresses the principle of non-maleficence:

Protection of the individual from harm is prioritized above other concerns.

As we can see in the breakdown of the three main perspectives, although elements of all four principles of bioethics are present in each thought process, different principles are prioritized in different situations. Based on the principles that you choose to stress, you can come up with a varying ethical viewpoint of the same issue. Additionally, another main theme is balancing the risk to the individual with the benefit to the society. In this case, the argument for external societal benefit is limited to specific case scenarios, while the argument to protect the individual from risk seems to be applicable to various situations regarding genetic privacy. Due to the seemingly greater potential for harm to the individual as opposed to the smaller potential for benefit to society, I would conclude that it is essential for genetic privacy laws to be shaped towards the realm of making genetic information unavailable and inactionable publicly.

While the breadth of this issue was too large to come up with a policy proposal, through the process of learning about this issue, it’s become clear that genetic privacy affects multitudes of situations in the human experience. As the technology advances, it’s important to deliberate on this topic so we can be better informed to comment on and change policies.

Therefore, it is imperative that we start a more focused and widespread conversation on how gene sequencing technology is impacting our society, and the ethical considerations we should take in order to ensure that this impact is a positive one.

Some steps you may take now are:

  1. Researching the different perspectives and reasoning surrounding genetic privacy laws. I’ve put together a section of the works cited document that showcases the sources that are “short-reads” designed for casual intake.
  2. Speak to people around you, whether healthcare officials or individuals greatly impacted by medical privacy laws. This was an amazing way for me to hear about the gravity of this issue and get a personal side of the policy.
  3.  Share any interesting articles or thoughts in the comment section of this page to get the discussion started!

Link to Works Cited: https://docs.google.com/document/d/11Fe6nnsJMC8XXSXqR4z5Zx_sT_GuZnxGQy7wkoHYcrg/edit?usp=sharing

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COMMENTS: 2
  1. April 26, 2020 by Kristina Peterson

    Eman. Thanks for doing this work. A question that comes to mind is on the rights of a child. I think parents can do some kind of genetic testing on their children, so are the children entitled to get that information when they are a certain age? What if you do not want to know your sequence but your parents already found it out…This is going to really get me thinking! If getting people to see things differently was one of the project goals – you pass!

  2. April 27, 2020 by Jenna

    Hi Eman! I really liked reading this project. It is so fascinating how genetic tests are available to virtually anyone with access to the internet, and it has such a big impact on people’s lives and others. I did not know that GINA existed in America, and I wonder if there are other policies similar in my country, Canada.

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